Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

April 27, 2010

In Garrett's Memory

 Over 5 years ago I set out on a mission to help other EB families who recently had a child with EB.  If I could just help(prevent) one family from going through the same tragic situation we went though, then I know I would have made a difference.  So I became more active on the on-line EB groups, started my web site, and reached out to new families.  To date I probably have spoken with, emailed, visited or communicated though the various on line EB group with over 100 families in the past 5 years.  Many of these babies I have seen grow up into adorable little kids; others sadly, are now with Garrett running around Heaven EB Free.  While all those deaths were tragic, some of them hit a little closer to home than others. A few times I have come close to just walking away from it all; sometimes it's just too much to take, but most days I think, how COULD i just walk away?  Until there is a cure for everyone with EB, there will always be new EB babies and their families will need all the support they can get.  Plus I have gained a lot of great friends from the EB community that I wouldn't have otherwise met.   And as fellow EB mom put it 

"The sadness is sometimes too much, 
but the benefits/relationships/rewards are even greater"

But in doing so, I need to make some changes.  One of which is that I have decided to move the site from the other web address to this one.  It is for many reason; mostly because of cost.  This site charges nothing to have a blog/web site.  Where as the service I was using before was $130/year! And despite the hundreds of hours of work I put into the site, I just don't have the time to make it just how I want it.  And it wasn't getting as much traffic as I had hoped it would.  A lot of the ideas I had and continued to come up with were also ideas others have come up with and implemented them much quicker on other groups and sites.  Now if I were to do them, it would look like I was copying the same idea.  So I have decided it would be best just to move the site to here.  Its all the same information as on the old one.  Just laid out differently.  There are some things I like better on this site than on the other one, but I will also lose some of the things I liked a lot on the other site.  But I think it will be a good change and will still serve the same purpose that I had 5 years ago when I first created Garrett's House. 

One plus is that it will be easier for others that visit the site to see the most recent updates because the post go in date order.  This site will strictly before EB information and if you want to read about my family and see current events, pictures and updates in our lives, feel free to check out my personal blog- Three Busy Bees and Two little Butterflies- I post updated and pictures of the girls as often as I remember too!

So finally after a week or so of design work, copying, and moving pages, I finally got to the "I am good with the layout of this site" point.  I am so picky when it comes to certain things; they have to be just right!  I'll probably change somethings around at some point; if I find a template I like better or a different back ground.  I'll add more pages on EB as time permits.  There are so many other topics I want to touch on. 

But for now I am satisfied with how this site designed and lay out!  So take a look around, click on 'follow this blog' at the top (preferably publicly so I people actually read my blogs:)  and let me know what you think!  Also feel free to link me to your blog or web site and if I am already linked, please change the link from to this one which is

If you'd like to add a button to your blog or web site for Garrett's house, let me know and i'll send you the HTML code.

The other web address will no longer be valid after May 5th 2010.

Thank you to everyone for the support, advice and opportunities you have given me in the past 5 years!

April 26, 2010

Personal Pages of others with EB

A handsome little angel named Jameson

Daylon: His journey towards a cure

Keric: the 4th EB patient to receive the bone marrow transplant

Hannah: The 5th EB patient to receive the bone marrow transplant

Jonah and his journey living with EB

Evan: A happy little guy with Junctional EB

Little Lady Leah: An Angel in Heaven

Cristina's Story : "Through the eyes of a patient"

Everlasting Butterfly : In memory of an Angel named Ava 

In memory of Xantha Maree Marshall

Fallyn: the 6th EB patient to receive the bone marrow transplant

Samantha: the 7th EB patient to receive the bone marrow transplant

Rafi: the 8th EB patient to receive the bone marrow transplant

McKenzie:the 9th EB patient to receive the bone marrow transplant

Bruce and EB : "An Adult living with RDEB"
The story of an angel named Janna 

Oxlee's Place

Jonathon's Story

Jamie Gibson: An Ethereal Suite

Jessica and EB : A girl from the mid-west living with RDEB

Beautiful Daisy: A spunky little girl with Junctional EB

John-Hudson and EB : The stroy of a little boy in NYC living with RDEB

Grace : An Angel in Heaven

An EB Angel named Jennifer

**if you'd like your page added on her, please let me know and i'd be happy to include it!**    

Personal Stories of others with EB

Mrs. Pat Barbrey: Woman of Courage and Determination

By Gena Brumitt Gruschovnik 
My mother, Lillian "Pat" (Brumitt) Barbrey was born in Rogersville, Tennessee, on April 24, 1934, a premature baby at 6½ months. She was born with Recessive Dystrophic Epidermolysis Bullosa, or RDEB. The doctor assured my grandmother (Nana) that her newborn daughter would not live a day. When she arrived in the world weighing less than a pound, her skin had been traumatized during birth and slipped off in places. She was in very poor shape. The country doctor knew nothing of her condition, only assumed things would get worse rather than better. They wrapped her up and laid her by a chicken incubator to keep her warm, and Nana, who could not breastfeed, fed her baby sugar-water as if she were a hummingbird.

I’m pleased to tell you that God saw fit for my Mom to live nearly 66 years with this condition. She endured a great deal of pain, but she loved life and embraced it. All of her doctors said Mom lived longer with her severe form of EB (Hallopeau-Siemens subtype) than anyone else on record, and the National EB Registry confirms this.

My grandparents moved to Maryland when Mom was 10½, and took her to National Institutes of Health (N.I.H.) to see if anything could be done to help her condition. She was 29 pounds at the time. Two doctors checked her over, and neither knew exactly what they were dealing with. One was particularly insensitive, saying, "It’s just like cutting off a finger, you can’t grow one back!" The other dermatologist, Dr. Gant of Navy Medical, was a consummate professional. He said he thought he could help her, and this man devoted many years to working with Mom. At N.I.H., she had the first surgeries to separate fingers so her hands could be more functional, although recovery was very painful. He prescribed vitamins, gave her iron to combat anemia, and she continued to "work" her arms and legs to increase flexibility. One of the worst problems with RDEB is the drawing-up of the limbs, and Nana and Mom worked very hard at prevention. The slow, persistent bathtime exercises worked wonders.

Shortly after they moved to Maryland, Mom was out to supper with her parents. They saw a couple enter the restaurant with two children, one noticeably impaired. My mother asked Nana, "Mama, what’s wrong with that baby?" She responded, "Why, honey, that baby doesn’t even know it’s in this world. Remember what I told you? All you have to do is look around, and you’ll see someone who’s in worse shape than you are." Wasn’t that wise counsel for a sensitive child who might spend the rest of her life feeling sorry for herself because of her medical condition? Certainly, my mother adopted this sage advice, and lived it.

Mom felt her adolescence was somewhat delayed, recalling that she still played with paper dolls at 15—but she filled out a little bit by the end of her teenage years. She learned to drive and got her license, and that helped her to feel more mature and self-confident. She talks about one double-date she had: "The four of us went to the Shoreham Blue Room, and he was an Arthur Murray dance teacher! And we rhumba’d and samba’d and tango’d and cha-cha’d and did everything imaginable, and I guess that was one of the very best dates I had, until I met my husband, of course… but… don’t feel that you can’t go out and have fun, ‘cos you can. You just have to be careful who you choose to have fun with, and make sure that they’re gentle and kind and a good person in their heart… because you don’t want to get hurt."

She was such a lady! When I was a child, Mom always smelled of White Shoulders perfume; she wore fancy dresses with matching hats and purses, and tiny high-heeled shoes that she ordered from a catalog called "Cinderella." She stuffed the toes of her shoes with tissue to make them fit, because her feet were uneven and misshapen, and she had a hard time finding "ladies" shoes in her size. She took very good care of herself. Her makeup had to be just so, and her hair was fashionably styled (pink and green jars of Dippity-Do were permanent fixtures in our house).

I was born in 1960, and my mother and father parted ways before my birth. I was a "breech baby" and the doctors performed a C-section. It was difficult for Mom, especially when the skin on her abdomen rolled up "like a venetian blind," but she survived my birth and excelled at motherhood. The doctors had continually told Mom that her baby would have the same condition she had, but she insisted her baby would be healthy and she was right.

The role of being a mother came naturally to her. I had pneumonia twice as a child and often contracted croup. When I was sick and Mom couldn’t afford medicine, she’d take a basketful of her homemade baked goods to the local pharmacist, Doc, and he’d send her away with medication to nurse me back to health.

When I was little, Mom soothed me to sleep at night by gently, slowly tracing my eyes, nose, mouth and cheeks with her rough, scarred hands, a method I now use for my own daughter with decidedly less skill. She had a wonderful voice, and sang in a church choir in her youth, but I best remember her singing, "Oh, What A Beautiful Morning!" when she threw open the curtains on sunny days, "Avé Maria" at Christmastime, and of course, my favorite lullabies.

Mom worked full-time as a negative stripper for Vitro Industries, and part-time as a beauty counselor. When I started school, she was so worried I’d be distressed on my first day that she took the afternoon off from Vitro and drove to my school. She found me outside at recess, playing happily with several other children, and she sat in the car and cried, because I was growing up. She laughed when she told that story, as she often laughed at herself.

It was hard on me as a child when I suddenly realized Mom was different. Children at school were cruel to me because of how Mom looked, and I found it very confusing, because to me she was just "Mom" and I never looked at her through others’ eyes until then. I began to feel very protective of her, even as she was busily protecting me.Mom and Dad were married in 1966. She described Dad as loving, patient and understanding: "I’ve been very fortunate… I had a lot of joy and a lot of happiness in my life." My brother was born in 1967, and my sister in 1973, also C-sections. Doctors didn’t want her to get pregnant again, and absolutely insisted my sister be the last, so Mom had a tubal ligation. She said, "I took care of my children and I loved every minute of it, and they grew into wonderful human beings. I hope I had a little something to do with that. Now, of course, I’ve been going through this period with cancer, and… it’s not easy, it really isn’t. But we’ll make it though one of these days, I’m sure." Family and friends were the focus of Mom’s existence, and we feel very lucky to have had her shining example in our lives.

I remember when I first started dating. Mom would extend her hand to shake, like Jacqueline Kennedy Onassis meeting a head-of-state. Sometimes, a boy would automatically put out his hand, and then do a double-take when he saw Mom’s! Often, they’d turn white, their jaw might drop, or they’d jerk their hand back as if she had leprosy (the guys who treated Mom like she was no different from their own were bumped up a notch on my "may have potential" scale). My family laughed about these reactions, but I know what it must be like for you when people act like your disability is something contagious. This, second only to the physical aspects of EB, must be the most devastating thing about the disease.

Mom’s right hand was fist-shaped with the thumb slightly separated. She used it to grasp flat objects or hold a pen. The middle and ring fingers protruded from her left hand, which was not as functional as the right. Mom didn’t have fingernails or toenails except when she was very young, or lips to speak of. Her frenulum was abbreviated, so her tongue didn’t work as it should; her scalp grew hard little "seeds" under the skin; her elbows, knees and shins were very reddened and scarred; and from the wrist and ankle, her extremities were disfigured. Hand surgery results only lasted a few years because of persistent blisters and contracting digits. She had severe tooth decay and eventually had plates custom-made. Her eyesight failed somewhat and her tear ducts malfunctioned, resulting in reduced lubrication or "dry eyes." Mom lost most of her hair, beginning in her 30s. She wore wiglets, and then wigs, to compensate. Chronic sores were a real problem, sometimes taking months or years to overcome, but she never gave up. Until recent years, when better topical medications became available, Mom used just lanolin, gauze and paper tape for the daily bandages, which she applied herself 90% of the time.

The past few years of Mom’s life were extremely difficult, as the squamous cell carcinoma that started slowly became life threatening. Initially, her family doctor had removed a mushroom-like growth from her tongue. The growth was biopsied and the diagnosis indicated the sample might be cancerous, but her normal skin cells were so similar it couldn't be confirmed. Then, about five years ago, Dr. Parlett at University of Virginia (Charlottesville) diagnosed squamous cell carcinoma on her hand and foot. Perhaps smoking was a contributing factor (she’d smoked for much of her life), but this cancer has been linked to RDEB, usually arriving like an uninvited guest in the second or third decade of life.

Mom agreed to have cancerous cells removed several times from her left hand and right foot, but the cancer metastasized and further partial removal was impossible; amputation became the only choice. This was difficult for Mom, who had kept her mobility up to that point. Suddenly, she was wheelchair-bound after more than 60 years, which was very traumatic.

Mom had irritations and blisters in her throat all her life, but she didn’t have an esophageal dilation until recent years (scar tissue had built up so that her esophagus was more closed than open). She had a few dilations when, about a year ago, a new family physician (who had no experience with EB) attempted to dilate her esophagus and accidentally perforated it. Her lungs filled with fluid and collapsed, and she was rushed to the hospital. There, she suffered from pneumonia and nearly died, but beat the odds yet again. The result of all this was that Mom had to get a gastrostomy tube, and she was never able to eat again. I don’t have to tell you she rued the day she let an inexperienced (with EB) doctor perform that last dilation. Please, even if it means travel or extra expense, protect yourself and make certain your doctors know what they’re doing.

Mom was very glad to have lived a full life, even though it meant she sometimes took chances. Playing it totally safe would mean living like an invalid, and life is something one has to experience, if one can. Mom plowed ahead and made the best of it. She went to school, drove, worked, got married, cooked, cleaned house, and had three EB-free babies who gave her three EB-free grandchildren.

I also think it’s important that Mom had a child-like faith in God. She really trusted Him, and that gave her courage. She was eternally optimistic that things would go well, and she was happy with her lot in life. She was very compassionate, and she nearly always had a smile on her face, despite her infirmities. When Mom heard about ongoing genetic research, she was very excited about it for others who would benefit. However, she totally disagreed with termination of a pregnancy because a fetus tested positive for EB, because she felt that was like saying her life wasn’t worthwhile. I can’t blame her for feeling that way—she fulfilled her every dream, as humble as those dreams were. So many healthy people waste their lives, oblivious to their own good fortune.

Mom died of a particularly aggressive form of pneumonia on February 16, 2000. Antibiotics were unsuccessful in fighting the rampant pseudomonas infection. My family was gathered around her, having come to be by her side from all over North America. We let her know it was okay to go, that we’d be okay, and we knew she’d be with us always. Each time we thought a breath would be her last, she managed one more. I held her precious right hand, which had held me and soothed me and fed me and loved me, and she finally drew her last breath. I know she suffers no more from the pain she lived with all her life, but I will always miss her.

It touches my soul so deeply when I hear of children dying with EB, never having the chance Mom had to live life fully. If a cure is in the near future, what a wonderful thing that would be! In the meantime, I hope we can all try a bit harder to accept others. Groups of people don’t deserve to have labels stuck on them because of race, sex, religion, or a disability. You can be a capable, productive member of society, and my mother is proof. It’s up to you how you handle any prejudice you encounter. You can allow others to make you feel bad, you can laugh it off and overlook their ignorance, or you can attempt to make them better informed.

You are different; you’re unique in facing your particular challenges. Whatever you do, don’t allow yourself to feel like an outcast, or you’ll be additionally burdened by defeat. You must learn to feel comfortable with who you are, and keep it all in perspective. Remember, you’re a person first; it’s secondary that you were born with EB. Embrace life and practice being confident, because attitude really is everything! As W.E. Henley said, "I am the master of my fate, I am the captain of my soul." I know sometimes it’s hard to cope, but seek out others who can help you do it when times are tough. My brave, determined mother saw every day as an opportunity for happiness, and she loved with all her heart. I learned that from her and I hope you can, too. Mom was 65! Perhaps the common notion that there is little hope for life beyond 30 years is good for fundraising, but it’s a poor motivational message! If my mother can be a source of inspiration and hope for you, let that be her legacy.

Copyright © 2000 by Gena (Brumitt) Gruschovnik

**if you'd like to share your story, please email me and i'd be happy to include on my site.**

EB In the News

Circumcision and EB

As the EB Nurse web site states:

"Circumcision is frequently an area of concern for families when their son has an EB diagnosis.

If the parents were planning to have their son circumcised, the fact that he has EB should not change the decision. The NEBR (National EB Registry) data suggests that,
within the study population, circumcision was preformed within all subtypes of EB and none of these study participants reported excessively poor or delayed healing."

Personal experience:  we had Joey circumcised when he was 2 days old and he had no problems with the procedure or any complications afterward and healed with a normal amount of time compared to babies without EB.